Tiny Light Kael
This little Tiny Light loves riding on his 24V John Deere tractor with trailer and riding in his Dad’s truck towing the cargo trailer or “fifth wheel.” Kael loves spending time with his grandparents and really likes being in the water—from playing in the bathtub to swimming in the lake. Also, his family says he gives the best snuggles.
Kael was born on time with no complications. Everything seemed normal until he was about six months old and his weight and head circumference started to fall off the charts. Testing from the age of six months to six years turned up nothing. Kael’s family had no answers as to what was causing his condition. It was after his third MRI that his parents, Kristine and Cam, received a phone call from the neurologist informing them that Kael’s white brain matter had gotten brighter, which indicated the possibility of a brain disease.
After further testing, Kael was diagnosed with type 1 Cockayne syndrome, a genetic disorder characterized by poor growth, premature aging, sensitivity to sunlight, moderate to severe developmental and neurological delays and a shortened lifespan. We’re not sure what the future holds for this little Tiny Light. All his family hopes are that Kael can enjoy the people and places he will encounter in life and to “just be a happy boy.”
Cockayne Syndrome Type 1
Story written by Kelsey Walker
Images Captured by Cormack Photography
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This post originally appeared on our November/December 2013 Magazine